Quick survey. . .

Are you involved in a HD support group?

Could you provide me with any details about why you like or dislike your HD support group?

Thanks for your help.

Pete

Hope to start one on Saturday and will let you know how it goes. Thanks!

Why do you ask? Are you thinking about joining one or starting one?

Thanks Nalo and good luck.

Steve, I'm not sure at this point. Just putting some feelers out.

Feel free to PM me if you would like to keep your comments private.

Thanks,
Pete

Pete, I participated in the HD Support Group down in Austin, TX for a few years - the last couple of years I was responsible for keeping the group going. When I moved away a few years ago the awesome social work took over the lead and I understand that the group is still in business and doing very well.

I found it very useful to get a sense of what other families were going through during the different stages of HD so that I could be better prepared. I found it to be personally satisfying to be able to share what I had learned about HD and what my personal experiences were.

The support group experience for me was all about taking what I didn't know about HD and replacing it with the insight and knowledge shared by others and being able to do so for others. I took full advantage of that.

I didn't have any memorable bad experiences (other than the time I showed up for a meeting and the hospital had bungled some schedule and the room was occupied for nursing training). However, I know that support groups are uncomfortable to many (which can be resolved by cyber-support groups) and local support groups don't always translate to advocacy. Sometimes a different type of personality is needed to generate the energy required to do fundraising or awareness activities. It's a fortunate group that can meld both types.

I wanted to see if anyone had any ideas about what worked well in their group and what didn’t. I would like to form a group that is for people with hd and by people with hd and not run by doctors and life coaches who know very little about hd and are geared towards the caregiver and not the Phd. Laura has always wanted to go to a support group meeting in our area but when she sees the format she gets a sour taste in her mouth. I would like to have a group where people with hd could help each other.

Pete

Hi Pete,

I am involved in an online support group, it has helped me tremendously. It is geared towards caregivers. We have a support group in STL, but it is too far for me to attend during the week.
I like the online group because I can attend anytime I have the time. Much like this board, I have received and shared experiences that are real life from those of us who have an all too intimate connection with HD and it's twists and turns.
I like your idea of HD folks giving each other support so keep us posted on how that works out when you get started. How would you recruit support group members?

Carla